Just to say “hello everyone”

[Afibflipper]

Hello to all those who know my story and helped me through many a dark days & night. I’m just checking in (first in a while) but the reason is I’ve been so well - yes I did say well (not ill). I’ve been living life to the full, I’m happy, no AF (only felt maybe 5-6 seconds since March and that’s all split not one session). So, treatments can work & I hope yours will too. Stay strong, one day your day will come x

[mav7]

Very happy for you !

To save looking at your bio, would you mine giving us a brief summary of your journey and treatments.

Would be very helpful to new forum members.

Thanks !

[Afibflipper in reply to mav7]

Total is over 18 years or so during which I’ve had 3 ablations, 2 CVs, (both CVs & 1 ablation were last year.) All my ablations unfortunately had complications but I won’t go into those.

For the whole 18 years of the AF I’ve been on a few beta blockers but settled on bisoprolol, last year upped to a pretty high dose - 15mg (tried to go to 17mg but that floored me) now on 2.5mg. Losartan was up to 100mg a day which is now down to 50mg daily (25mg am & pm keeps BP pretty perfect (whole dose in one go too much). I take Eliquis 5mg twice a day. I take an anti-arrhythmic Flecainide 100mg twice daily (prior to that I had an awful allergic reaction to Amiodarone.)

After the CVs & ablation it was thought the only way forward was pace & ablate, however reluctance due to being only late 50s there were more risks to consider. I tried Digoxin which seemed to work initially but then the HR began to rise again. About a month later I became so ill, breathless, unable to walk hardly at all - just getting out of a chair left me gasping, my legs, abdomen swelled with 10lbs fluid eased with Furosemide 40mg & Digoxin ceased. It was thought to be Right HF but echo showed right side of heart normal, left mitral valve mild/moderat leak but everything else was fine heart wise. The liver became very engorged, enzymes very high and all over body itching, pain actually became almost unbearable. I then had a hunch, I was on a Atorvastatin 10mg - they can affect people differently & after stopping it and taking Furosemide doses anywhere between 0-40mg things are great, pain that had been everywhere (literally) is now back to just the same old areas I have arthritis & liver recovering. I went on Rosuvastatin 10mg which seems ok for me. Consultant said he had no idea what had caused this ?? RHF

4 months after the ablation, all of a sudden, I went into NSR & 🤞it stays that way. Bare in mind I am someone with many allergies & sensitivities incl meds as well as many medical issues, so, what I’ve been through is definitely NOT the norm for most. Hope you get success with whatever you’re going through x

PS - Other tips I feel helped me - lost weight, only have decaf tea/coffee & cold drinks eg cokes search out those with no caffeine & no sugar. Finally reduced salt intake also helps, daily multivitamins/minerals, extra vitamin D are really my main changes.

[mav7 in reply to Afibflipper]

Appreciate you sharing your story.

Best to you in managing your health to remain in NSR. I think what your story indicates is the need for patience and awareness of symptoms.

[Fullofheart in reply to Afibflipper]

HelloI know we've done this before but our stories are so similar.

I have 18 years of AF, about a decade in persistent. Last year I had 2 cardioversions and 3 ablations. All were thought to have failed. Well first one was a definite fail/ was aborted. 2nd, I had NSR for a day after then straight back into AF. Weirdly 5 months later 9 lovely days of NSR but then straight back into persistent AF. They tried ablation one more time, bless them...and the same, just one day. But then 5 months on again and out of the blue NSR. I'm nearly a month of it now and can't quite believe it. Neither can the EP or cardiologist. I'd come off all meds (I too am limited what I can take due to allergies and side effects). I was getting ready for a drug switch from rhythm control to rate control and heart failure meds. I felt lowsy after a week of no meds and was just getting by/ biding my time ready for the switch. I'd had a pretty sobering post ablation review and told little they could do. Too young for pace and ablate/ too many risks. But likely only option in a few years. To try and manage best I could until then with rhythm control. EF 43% so heart failure meds to try and prevent further deterioration. All felt a bit grim at 47, now 48, but was getting my head around it ....then NSR after 3 weeks of no meds. So still not on anything (other than thyroxine....result of amiodarone). Feel much more like my old self. No plans to introduce more drugs now (unless AF returns) and blood test for heart failure was in normal range. Feels like crisis averted....at least for now! Who knows how long it will last...Great though!!

[Afibflipper in reply to Fullofheart]

My goodness, we are almost twins - glad you’re doing so well too & may it continue. You haven’t stopped the anti coag have you? I’ve stayed on the Apixaban & Flec as there’s the possibility of AF return since it’s Flutter the ablation treated. I’m not chancing anything now I am so stable.

Yes like you allergies-especially Amiodarone but, loving life pills or no pills - hope you continue symptom free x

[Rainfern]

Lovely to hear from you Flipper and that’s such good news! Thanks for keeping us posted. Keep looking forwards, enjoy every moment and stay well!🥰

[Gumbie_Cat]

So glad that you’re doing well! I was just thinking that I hadn’t seen you around here, and glad that it’s for the best of possible reasons.

[jeanjeannie50]

It's good to hear that you're doing so well, long may that last. Best wishes for an action packed life.

Jean

[BobD Volunteer]

Good news is always welcome Well done and long may it continue.

[Singwell]

So happy for you. I know how it feels. Had some ups and downs due to uploading thyroid meds but no AF I detected. It does feel good doesn't it?

[wilsond]

Very happy for you!,a lovely positive story for a Monday morning. Thank you for sharing this xxxxxx

[Cha275rL]

That’s fantastic news Afib, great to hear that after all the problems you’ve had (and no doubt thought would never go away). I’m delighted for you. Xx

[Ludham]

hi Afibflipper

Often think about you and thought no news is good news.Really pleased for you after such a terrible year you had sicery hope it all continues upwards and onwards.you must feel tired with the high dosages you are taking but obviously keeping you going

Take care xx

[Afibflipper in reply to Ludham]

Hi Ludham, I’ve still thought of everyone on here whilst gadding about with new found energies. Maybe I’ve confused since I replied to Mav7 on the historical doses so Bisoprolol is now 2.5, Losartan down to 50 & split dose keep things perfect for 24hrs (all in one dose dropped BP low so was tired and feeling light/dizzy. Flecainide maintained at 100 twice daily. Think that’s all the ones that make you tired. Remember the asthma - omg the new inhalers etc have kept me so well even during this high heat/pollens (hope I stay ok autumn/winter. The EP, Respiratory & GP have worked miracles (with a little advice & tweeks from me 😂 ). Insomnia is still present & correct maintaining getting to sleep time as around 3-6am & still some marathons of 24hrs+ without h sleep but I’m now able to just carry on. Very little shear exhaustion as before.

Hoping you & Mrs L are doing well right now. X

[JOY2THEWORLD49 in reply to Afibflipper]

Hi

Insomnia is not good flipper.

Try Dopress. Try wait for tiredness before popping a pill. For 2 years I need them, not addictive. Stop when you want, And I understand 5 is full dose but I had just 1.

Cheri JOY. 74. (NZ)

[Afibflipper]

So lovely to see all your names come up, thank you for your good wishes as always. As always, anyone in need of an ear I’m always here xx

[Threecats]

Good to hear your positive story, flipper. Very pleased to hear that things have improved so much for you. Long may it continue. All the best, TC

[Vonnegut]

I tried to “like” your lovely post but the likes went to “unlike” so I pressed it again to get the 10 back but really it should be 11 or may well be far more as it’s such a great post!

[Afibflipper in reply to Vonnegut]

Thank you for that - glad you liked it. Hope you are Ok x

[Vonnegut in reply to Afibflipper]

Surviving!

[Afibflipper in reply to Vonnegut]

Hope things aren’t too rough - but surviving is good 👍 make sure you pamper yourself in some way on a daily basis. Something small that or big, that’s just for you x

[Vonnegut in reply to Afibflipper]

Off to tea with friends soon to celebrate the summer solstice- not just for me- for us all! I’ve already had small successes at Wordle, Waffle, Quordle and Blossom, my daily fun things!

[Afibflipper in reply to Vonnegut]

Good to hear - keep at it enjoy your tea & celebrations x

[JOY2THEWORLD49]

Hi

Well done with YOUR decisions.

I've been told AF persistent for life just like taking thyroxin for life.

Ablation cannot be considered.

But meds are improving my life. Especially CCB Diltiazem for rapid H/R

and the thyroxin Synthroid as a synthetic replacement hormones to keep my body working.

I guess if one has been told AF for life it's waiting for a breakthrough.

Meantime we should feel to be alive.

Especially special is seeing the great grand children, grandchildren and my children who are our future.

Carrying on smiling Afibflipper. Perhaps you should change your name to Goodflipping or nomoreflipping!

Cheers JOY. 74. (NZ)

[Afibflipper in reply to JOY2THEWORLD49]

I’m sorry you can’t get other treatments but so glad you are beginning to feel better with the current medication

Definitely smiling, I almost feel that it was just a bad dream (😂 I should be so lucky) no I feel very lucky indeed. Yes look forward to everything try not to look back. Laugh with the grand babies -sounds lovely. I’m still hoping for those. Xx

Ps Re the name - maybe NomoreflippinAFiborAFlutter

[Vonnegut in reply to JOY2THEWORLD49]

Once again the “like” thing isn’t working! When I “liked” your post it went down to 1 from 2 so I had to press again but it really should be at 3 or more!!

[JOY2THEWORLD49 in reply to Vonnegut]

Hi

Oh is that the heart shape below. I've never paid attention to it.

Yours went from 0 to 1 and back to o????

Thanx. JOY